Tuesday, December 23, 2008

I'm back. I know I know, simmer down. :) I realized that I have neglected to update you all on my transplant clinic visit I had on the 12th. Hence the reason for this post! :) So..here it goes. Ready?

I'm a fat ass. I weighed 112 lbs at weigh-in at the clinic. That is more than I have ever in my life weighed. I never thought I would make it to 110. Much less, OVER 110. And at the rate I'm going, I will probably be up to 120 by New Years. I mean, Realistically, I KNOW I'm not FAT for real..but watching myself outgrow all of my clothes is really starting to make me feel like a true fatty. (no offense to my 'big boned' readers of course) I had to get new jeans for Christmas b/c my jeans are all getting a little too tight. Plus, after I get my new lungs, I will probably gain a lot of weight from the Prednizone. But I hope not. *crosses fingers and toes* I feel like I have a Budah belly. I'll have to take a picture some time of my belly and post it. Oh well...getting fat isn't the worst thing in the world. At least I'm alive..

Moving right along, my FEV1 on my PFT's has dropped by 1%. For all of you crappy lung challenged folks, FEV1 stands for Forced Expitory Volume over 1 second. And PFT stands for Pulmonary Function Tests. Basically, at every clinic visit, I have to do Pulmonary Function tests, where I blow into this big tube connected to a big machine and it measures lung function. They ask you to take a big breath IN, then blow it out as hard and fast as you can for as LONG as you can without having to breathe again. And i mean for as LONG as you CAN. I mean they want your face turned beet red from lack of oxygen from blowing so hard and long. The FEV1 is measured during the first second as you blow out. The last clinic visit my FEV1 was 21%. This time, my FEV1 was 20%. Oh well. Shit happens.

Rolling ahead, my 6 minute walk was also a lot worse than the last time. The last 6 min walk that I had, was in July. I walked almost 1000 ft. over 6 minutes. This time at clinic, I walked only 600 and some. (can't remember exact number) That's a huge difference. But, Kristin, the PT for the transplant team told me that the first one may not have been done correctly back at home. But, assuming that it was...that's a huge drop.

So put together, all this information doesn't sound all that great. All three things being on the negative side. Well okay, the weight isnt really negative for my health. But to me it is, so shut your piehole. GOSH! *rolls eyes* But the last two seem rather negative and bad news-ish. BUT - in reality...this will only help me, transplant wise. Because, my allocation score will go up, because I did worse on the tests.

So, therefore, its not all THAT horrible to do worse. Just as long as I don't seem to be suffering any ill effects from it. Which I'm not. So that's good. :)

Now you're all caught up for now. Dinner is here. Time to add some more lard to my Budah belly!! :)

Friday, December 19, 2008

It's with a heavy heart that I write today. My good friend Christian Goodpaster passed away last night around 7:30 pm. He was in Duke hospital awaiting his 2nd double lung transplant. His breathing wasn't very good at all but he was still holding strong.

But yesterday, he took a turn for the worst and was placed into ICU and put on the vent. I prayed so hard last night that he would get the lungs, but I guess God had other plans for him. Apparently, while on the vent, he threw a clot in his lungs and they couldn't save him. It's my guess that his body was so tired of fighting it just gave in.

Although his body may have given up, I know his spirit will live on. He was such an inspiration to myself and others who are waiting for a lung transplant. After his transplant he really lived his life. He didn't waste one minute of the extra time he was given. And that's what I plan on doing as well, when I get my new lungs.

Even though Christian and I never got to meet in person, I still consider him a cherished friend. He was such a great person and friend. And he was always so positive, even to the end. I am praying for his family during their difficult time. I will miss him dearly, but I will take solace in the fact that he is now breathing easy in Heaven and I know that I will finally get to meet him one day.

Sunday, December 7, 2008

How are all my little kiddies doing today? Is everyone looking forward to Christmas? I am. I want my mp3 player so that I won't be damn bored when I do my rehab here at home. The treadmill is in my bedroom in the corner. And I can't even really see the television from there either. So I need something to keep my mind off of staring at the time as it counts.

Speaking of rehab - I did 25 minutes on the treadmill yesterday! *no applause necessary* I was pretty proud of myself. I didn't feel quite so lazy as usual. I must admit I have slacked off lately since Medicaid unceremoniously booted my ass out of Pulmonary Rehab at the hospital. But, now my Mom and I are going to work out at the same time each day. So hopefully, that will help me to stay motivated and focused on the prize. (NEW LUNGS)

What else am I looking forward to with Christmas, you ask? Oh, well I'll share. :) Most of all, I believe, I am looking forward to being able to open and carry around my new (and first ever) Kathy Van Zeeland bag!!! *and the crowd goes wild* I never thought I'd actually get one! I saw one online at Belk.com that I was going to order. But by the time I got the go-ahead from Mom to order it, that particular one had already gone off sale!!!! I was so heartbroken! So I gave up and just picked out an awesome Nine West bag at Belk here in town, and another smaller bag - a clutch. *sigh*

BUT- This past Thursday, Mom and I went to the mall in Winston-Salem to finish my Christmas shopping from them. We had to walk back through Belk on the way out of the mall and I decided that we should just check to see if they had any, just for fun. (The Belk at home doesn't carry them b/c they are sorry)

So, we found the part of the store that had the purses, and low and behold, there they were! A whole KVZ section! I was in HEAVEN. I swear, if I had had the breath (and leg muscles), I would have gotten out of that wheelchair and ran my ass right over and thrown myself up on the shelves with those glorious bags! BUT-

Since, I CAN'T breathe and my leg muscles are weak as hell, my Mother just pushed me over to the area quietly in the wheelchair. It took us a while, but eventually after looking through all the different ones, I finally found the one I truly wanted! The one that "got away" on the website! (went off sale).

It was if God himself had come down from Heaven and put the purse in my hands and said, "Here thy daughter, take this purse and cherish it, for it will always bring you joy and happiness. B/c you deserve it." *tears* And to my JOY, I was even able to talk my Mom into purchasing it for me for Christmas!!!!!! (even though it went like $10 or $20 over the before set spending limit - but hey, what are you gonna do? Some rules are meant to be broken! Especially when faced with such an awesome buy as this beautiful bag!)

When we got home that day, I immediately pulled my brand new KVZ purse out of the bag and promptly embarrassed myself by drooling over it and touching it and stroking it. I zipped and unzipped and zipped and unzipped, explored its inside pockets and squealed with glee over the rhinestone embedded Crown princess KVZ logo on the front.

Then my mother wrenched it from my hands and away it went, back in the bag, to the office with the rest of the Christmas gifts. I waved goodbye to it and told it not to worry that, "We'll be together again soon." I swear I think I heard it whimper as my Mother shoved it in the bag.

THEN - last night, my Mom was wrapping my Christmas gifts. Once again, I found the bag containing my beloved bag and freed her from her cruel plastic cave. Wherein, I swiftly began to play with it again for as long as I could. Then once again, my Mom took it away from me and it disappeared from view as she wrapped it up by dropping it down in a bag, only to be seen again on Christmas morning. *sigh*

Thursday, December 4, 2008

Wow, what a week so far. I'm tireder than all hell. I've been to Chapel Hill and back 2 times this week. AND I have to go again next Friday to see the transplant team. ughhhhh.

Tuesday morning I had an appointment with the sleep specialist in Neurology at the main hospital. I don't know what I expected her to tell me, but it wasn't what I heard. This lady is crazy.

She gave me a list of rules which consist of (no specific order): Lights out at Midnight - What the hell? Am I band camp? Do I need to pull out my clarinet from 6th grade? She is trippin'!

NO naps! (unless I absolutely can't stay awake) Is she mad? That's like telling a monkey not to eat bananas - it's in my nature.

No T.v. or computer after 11 PM. OH MY GOD - She is the devil! I think she is purposely trying to ruin my life.

The last one - and definitely the worst. NO CAFFEINE...which means, *TEARS* NO PEPSI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She might as well rip my heart from my chest and laugh at me as she throws it down and stomps on it. That's how bad it hurts. Granted - I can drink caffeine free Pepsi and I WILL - but its just not the same.

I'll go along with her little scheme - for now. But I'll be damned if I don't drink a regular Pepsi every now and then. What is it they say? As long it's in Moderation, it's okay? :) What she doesn't know won't hurt her!

She also gave me some pills to take, hopefully they will help.

Last night Justin and I took his Mom's car back to Chapel Hill to go to support group. It was pretty interesting. The transplant surgeon (Dr. Egan) who started UNC's lung transplant program was there speaking on his research.

They are doing research on Ex-Vivo lung transplantation. Which means they would be taking lungs from non heart beating donors - meaning those who arrived at the hospital D.O.A. or die at the hospital b/c their heart stops beating and can't be resuscitated. They believe that it may actually be better than brain dead donors b/c brain death can cause damage to the lungs. But lungs after heart death, still oxygenate (unlike every other organ, b/c the other organs depend on blood pumped from the heart to the organs - but the lungs don't)

It was very interesting. Dr. Egan is brilliant. There were a couple of videos we saw that were awesome. Below is the website that explains his research.

RE-Introducing....

I'm a 29 yr. old female who had a lung disease called Bronchiectasis for 17 years. On Father's Day, June 21, 09, I recieved a double lung transplant at UNC Hospitals in Chapel Hill, NC. Weeeeeeee I can breathhhheee!